“He who is not courageous enough to take risks will accomplish nothing in life.”
It’s hard to believe it’s been a year since I began my journey with Lemtrada. Tomorrow (Monday) I step back into the ring once again, and quite honestly, I’m not as positive as I’d like to be, but hopefully more prepared. They say the benefits of this therapy outweigh the risks, but I sure wish I felt more confident going into the second round (ding-ding-ding!).
Sadly, my body is not as strong as it was a year ago. Lemtrada has really taken it’s toll, and I don’t feel as good physically, mentally or emotionally this time around. I was hoping my body would be stronger and my symptoms would be less severe, but unfortunately that’s not the case. The spasticity in my legs has gotten worse, and my overactive bladder issues are still a real pain in the ass (literally, since the implant in my butt cheek isn’t really doing it’s job). After hearing from many neurologists and fellow patients, I now understand that some people sail through this treatment and some people don’t. Unfortunately, I haven’t been sailing much.
For example, I’ve been preaching to patients the importance of hydrating days before their treatment to help minimize the side-effects of the infusions. So following my own advice, I began that tedious, flavorless journey of pounding water only to wake up Saturday morning with explosive diarrhea from God knows what. Yippee! Dehydrated just in time! Needless to say, the plans my boyfriend Steve had of taking me out for the “best lobster roll in San Diego” before my diet becomes extremely limited, went immediately out the window. My “last meal” was an extremely satisfying applesauce and saltine cracker combo. Mmmm… tasty.
On the positive side, these past six months, I’ve been speaking to groups of patients and sharing my story all over the country. I feel very blessed to have been given this opportunity, and I’m looking forward to getting back out there once my body rebuilds itself and my blood counts are high enough to allow me to travel. I have to be optimistic that this treatment will eventually do what it’s supposed to and help stop the progression of my disease. So I am doing my best to keep my sense of humor and of course, my hope strong. I’m fortunate to have the support of my wonderful friends and family (especially Jake ~ who will be in my corner again this year), and my goofy girl Grace who makes me smile everyday. As always, I appreciate the prayers and well-wishes.
With love and hope (and Grace),